This Is What a Hospital Stay Looks Like
Whenever I feel ill, I exhaust my options. To make my sickle cell pain go away, I drink hot water, take painkillers, fill my hot water bottle, find a distraction, or sleep. Most of the time it works, but sometimes the pain is so bad that I call 999 — reluctantly.
When I get a response (someone always picks up by the first ring), I cry because of the pain I’ve been fighting to hold back. I cry in disbelief that my body could betray me to the point where I can no longer look after myself, and I cry in relief that an ambulance is on the way.
I’m a different person when I’m ill. Only a few of my friends can testify to this. You’ve seen me at my worst if you’ve seen me right before I call an ambulance. All I know is I have pain that needs to go ASAP.
Once I receive confirmation that the ambulance is en route, I start to pack. If I’m ill enough to call the ambulance, I’m not leaving the hospital that day. I normally stay for four to seven days, so I pack loose-fitting clothes, toiletries, and my electronic devices. I then call friends and family to let them know what’s wrong and where I’ll be.
The ambulance arrives typically within 10 minutes. Paramedics administer gas and air and ask me how I’m feeling. At that point, I’m normally given my first dose of morphine, which makes me drowsy.
I fall in and out of sleep over the next three to five hours. I’m transported from my bedroom to the ambulance to the ER to the hematology ward, where they admit me as a patient.
Several student doctors accompany my hematologist when she visits me. She assesses me and explains my course of treatment, which doesn’t take more than 10 minutes. Then she’s off to see her next patient.
Treatment typically begins with strong painkillers. When morphine is injected directly into my bloodstream, I feel its effects instantly. I’m in the most pain at the beginning of my hospital stay, so I take morphine as frequently as legally possible. As my pain decreases, I take oral morphine, which takes longer to kick in because I am digesting it.
After three to four days, once the pain is less persistent, I use my regular painkillers. I take dihydrocodeine and acetaminophen every four to six hours until the pain has decreased significantly. I might also undergo a blood transfusion or a red cell exchange, depending on my hemoglobin levels. Then I rest until I am well enough to be discharged.
Once I’m home, usually after a week or so, I try and pick up where I left off. Health-wise, I do what I’ve always done: medicine, water, warmth — the usual. Work-wise, I play a very long game of catch-up. I try to find a balance between taking it easy and tackling my ever-growing workload.
Being in the hospital reminds me of the important things in life. Hospital stays rid you of all your “problems,” which usually sort themselves out one way or another, and remind you of what matters in life. You also realize that some things aren’t as serious as you make them out to be.
I’d love to hear about the similarities and differences between our hospital experiences. Let me know in the comments below!
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Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.
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Comments
Taylor
Thank you for sharing your experience, Tito. I do not have SCD myself, but as someone who advocates for those who do, it's so helpful to hear your stories. Wishing you all the best. -Taylor
Tito Oye
Hi Taylor,
Thank you for your comment, I'm glad it was helpful ❤️
Christel Wade
Hello my daughters name was Lauren Ashley Wade She passed away 2011 at the age of 19 after entering into the hospital with the pain crises Which turned into acute chest syndrome (was not placed on a hematology oncology floor) Was placed and lCU what is giving a blood transfusion 24 hours later was placed on a respirator 24 after being placed on a respirator they finally called in a hematologist who then told me that the transfusion made my daughters blood thicker and she should have had a blood exchange four days later Lauren went home to be with her heavenly father🙏🏽🌞😍 please when your love one enter into the hospital ask a lot of questions make sure the appropriate doctors are present to treat your love ones.Godspeed
Tito Oye
Hi Christel,
I am so sorry for your loss.
I agree it is so important to make sure we are as informed as possible when we are in the hospital environment.
I am sure people will learn from you and become more inquisitive.
Thank you for sharing ❤️
Great Vengeance
Thank you for sharing your very personal experiences. I too have SS full blown. whilst living the bleak cold dark environment of London City this cold is a main factor in causing me pain and serious secondary issues. From a child I've had major crisis. But at 13/14yrs I consciously remember experiencing the most severe and crippling pain. The pain was pounding with every pump of my heart like my blood cells had turned into sharpened steel spike balls and blades (literally what occurs at cellular level). I was spreading from my back (kidneys) to all joints, lower legs, shoulders & chest making those areas the most painfully tender and sensitive to touch I can't even move/walk. It was this age I experienced the A&Es first and most desperate move was to administer morphine into my blood. It was 10mins later I began to feel one of the most horrendous sensations I have ever felt. What I can only deduce was occurring was the pain and damage being done to my flesh and organs from a lack of blood flow and oxygen was now being felt by my nerves 100×s more because the morphine which almost paralyses me and acts as a muscle relaxant takes away my natural ability to use my muscles to brace for the pain and control my breathing. The morphine doesn't act as a pain reliever, it only takes away my form of attack & defence to the pain of my blood having stopped flowing leaving me there wide open to the agony. When it first happened I connected it to the morphine injection but thought it was just my pain worsening. The second time I knew what was happening and vowed to never receive 10ml diamorphine injection in the a&e. The feeling is just sickeningly indescribable. Hope this helps somebody. I also hope it's not used for evil, for many-a-time in my moments of need and treatment of my illness I have caught so called health carers doing me harm or cutting corners, withholding treatment from me etc, etc.
Tito Oye
Thank you for sharing your experience.
It fascinates me that people with sickle cell can have completely different experiences and react to treatments so differently.
What do you find to be the most effective form of treatment when it comes to managing your pain?
Cyprian
Whenever I have a major crisis which is now very frequent I feel like the reset button on my life has been pushed🤧🤧
Tito Oye
Yep! It can be so frustrating at times, having to pick up from where we left off seems so discouraging and tiring but we have to keep going. We should always do what we can and take comfort in the fact that we give it our all! ❤️
Lesly Batemon
My son is currently in the hospital in Las Vegas. He's visiting and is in the beginning of a severe pain crisis. They are ignoring him and not listening to what he needs to get through this. Myself and his doctor's here in Texas are in complete shock of what is happening. I'm doing everything I can as far as trying to get him a social worker who'll advocate for him. The nurse even agreed that something more should be done but the doctor won't order more pain meds. I've called multiple times and the charge nurse is not helpful and seems afraid to speak up. This is insane. I'm going to try to find a lawyer to see what can be done. And catch a flight to Vegas. Please pray for us. If anyone has any knowledge for us it would be greatly appreciated.
Latisha Bellamy
Hi, Tito. I just happened across your page, and I am glad I did. I have a 15-year-old daughter with Sickle Cell Disease. I am always encouraged to see other sickle cell patients and learn from their experiences as young adults because I never know how long I will be around to advocate for my child. I try to prepare her with each hospital visit and believe me there are plenty. Even now, I am contemplating whether today will be the day to return to the ER. We were just there a month ago, and her pain wasn’t treated sufficiently then, which is also why we’re headed in that direction again. She’s usually hospitalized for about two weeks every time she goes. She has had multiple acute chest episodes and multiple transfusions, and she currently has no life expectancy due to random aneurysms that developed on her brain because of her condition. Thankfully, though, she still lives a relatively normal life as a teenager. She is a fighter, and she loves life and especially making others feel good even when she doesn’t. I will be sharing your article with her later on today. She is always encouraged to hear the stories of others with her condition. She sometimes feels very isolated from the pain and other issues that her condition brings, and stories like yours I believe can give her some hope. Thank you.
Neslie Mack
I’m a 34 year old woman who has dealt with sickle cell disease (SS) my whole life. So far in the last two years I’ve been in and out of the hospital every month it feels like, and of course if you go to the hospital, you’re made to feel like your pain is not that bad if your blood work doesn’t show sickling. Even today as I write this message I’m in severe pain cause of a crisis in my back and legs caused by necrosis in my hip for which I have to have a total hip replacement surgery this year, but I’m not sure if I should go to the er cause all they think I’m there for is pain medication. I hate telling my family cause they worry and I feel like a burden, even though I know they love me. Sometimes I get doctors that understand my condition and they don’t judge me and then I get the doctors that don’t want to listen to you as a patient when your telling them what works for you to get better from a crisis. Just last month I was in the hospital for a crisis and only 2 days in the doctor decided to change how frequently I got my medicine and it backfired cause it made my crisis worse and cause me to have to stay in the hospital longer than I should’ve been and decided to let my hematologist take over my care, but still put in his notes that he thought I displayed narcotic tendencies and it hurts when people assume the worst and it makes it harder to trust to go to the er cause you don’t know if you’re going to get a doctor who truly wants to help you. Sickle cell deserves more attention and doctors need to learn more about it so that they can help people, not make them feel like they’re pain doesn’t matter.